When baby Alice was 16 months old, she came to Naomi House to spend her last days, or hours, with her family. Then everything changed. This is Alice’s story, told by Alice’s mum, Joanna.
Alice is 16 months old and has spinal muscular atrophy (SMA) type one. SMA is a rare condition that makes all of the muscles in the body weaker, including muscles needed for breathing. At six months old, Alice was rushed to Bristol Children’s Hospital and was the first girl in the country to receive the new gene therapy treatment drug, ‘Zolgesma’.
Alice did well to get through the winter but unfortunately, from January 2022 – April 2022, she had seven respiratory infections caused by aspiration pneumonia. It was a huge shock to us when the April admission became serious very quickly, and we were faced with the decision of intubation, an intrusive procedure to support Alice’s breathing, but something that she might never be able to manage without.
Our other choice was to go to a hospice to spend the last moments of Alice’s life, which the doctors were unsure whether would be days, or hours.
As soon as we got to Naomi House we were made to feel so welcome and the staff were so kind.
Even though the situation we were in was an awful one, we quickly felt at home with the lovely home cooked meals that were kindly provided for us, the words of support from the nurses, and kind advice from the doctors.
We made the most of every moment when Alice was awake; from creating keepsake footprints and playing in the sensory room, to playing in the garden and using the hydrotherapy pool, which Alice loved.
We were planning to take Alice on her first farm trip to see the animals. She has a dog at home called Frisbee and loves watching him so we thought she would love to meet other animals. Unfortunately, even though Alice was improving, when we tried her in the car seat her oxygen levels became low, and after much consideration, it was decided that a visit to the farm would be unsafe for Alice at this time.
So, the amazing Naomi House staff said if we couldn’t go, then they would do their best to get some animals to visit Alice at the hospice. Amazingly, they organised for alpacas to come to the hospice. Alice loved meeting them and was very fascinated by them, as well as taking an instant like to their snack of carrots! It was so kind of the team to organise this for us.
As time went on Alice defied all odds and appeared to be getting a lot better. She would play Peekaboo with the nurses and we began to invite family and friends to the hospice to join us in the memory making. Alice has a love for music and one of the lovely nurses at Naomi House invited us into the music room, where she played nursery rhymes on the piano to Alice and two of her NCT baby friends, Max and Taron. It was such a lovely experience and just one of the many amazing experiences the staff at Naomi House helped to facilitate.
Alice continues to make solid improvements and we have been transferred back to hospital to prepare for going back home, a day we thought would never happen again with Alice.
We really feel like the holiday-like environment and lovely staff that Naomi House provided was the miracle cure for our Alice.
We are unsure as to what the future will hold, but we feel very lucky to have had the experiences we had at Naomi House and the support from them going forward.